re Hyper IgM

[Guest guest]

Yes, they did the CD 40 ligand testing. This was in 1998 and blood samples from

both Sam and me were sent to St. Jude's in Memphis for the testing. Last year

AR Children's in Little Rock took a sample of Sam's blood for a prototype

testing of a new diagnosis test that is supposed to come back in 2 or 3 days as

opposed to the 2 or 3 months that it took back in 1998. It was neat to be part

of something positive and was good to know that we were helping so that parents

don't have to sweat it out for so long before getting a definite diagnosis of

the Hyper IgM Syndrome.

Sam's IgM has always been within the normal range. I don't believe it's ever

been above normal any time it has been tested. I don't know how typical that is

for Hyper IgM patients. I think that is it very common for the IgM to be

elevated. Sometimes substantially. Of course, one new thing that we learned

when they used Sam's blood for the prototype is that - as the doctor put it -

Sam is the " luckiest of the unlucky " Hyper IgM patients. He has the most

minimum of the problems that have that diagnosis. Only one of the way over my

head genetic sequences are reversed. There are others with the same diagnosis

but much more severe problems.

As far as the mouth sores are concerned, Sam has never had one. Of course, he

had meningeal encephalitis at 17 months (which is what led to his diagnosis)

which was caused by the HSV1 (cold sore) virus. The infectious disease doctor

that figured out there was an immune deficiency mentioned that PID's were

particularly susceptible to that kind of encephalitis. I have chronic EBV and

my youngest daughter has active EBV (if she misses more than a couple of doses

of Valtrex, she gets a cold sore in the same exact area of her lip). Epstein

Barre virus is in the herpetic family. Both my parents have EBV, my dad's is

chronic mono. My grandmother on my mom's side died from HSV1 meningeal

encephalitis and my mom's sister never had a cold sore til she was an adult,

then she had sores all the way down to her stomach. There seems to be a real

weakness to this in my family, especially my mom's side. The reason I bring all

of this up is that, when I voiced my concerns to the doc (immunologist) about

the cold sores, mono and chronic EBV, he said that the IVIG treatment was

probably protecting Sam. Sam has never had the mouth sores and was only on the

Acyclovir via IV during the course of his illness at 17 months of age.

I remember when Sam used to go to bed early, before the IVIG really took hold.

The bright side is that he is still really good about going to bed when he's

tired, regardless of what time it is. I've found that, for Sam, a little extra

rest can often circumvent an illness. And he has always been cranky when he had

a sinus infection brewing (though they say sinus cavities are not developed that

young. All I know is something was infected and my doc called them sinus

infections.)

Remind me, is in IVIG? If he isn't and you do get a diagnosis of Hyper

IgM, that is the standard treatment, along with prophylactic antibiotics.

I'm sure you'll let us know the test results. I hope you get some answers soon.

Praying for you in the meantime.

God bless,

Wenoka

Re: test results Ursula and all

Wenoka,

I guess I forgot about Sam's diagnosis....that is what they are looking at now

for ......How high is his IGM???? 's was normal, but is now

elevated...I don't know what the latest numbers are tho....Did they do the CD

40 ligand???? I think that that is the test that we are still waiting for.

Any input would be helpful...He is so tired and cranky lately....He's asking

to go to bed now and it's only 8???? I just think that it is odd that he

would behave like that????? Does Sam have trouble with mouth sores????

's have been better lately, but he is sure acting like he has them. I am

just so anxious to get our results back....It seems like forever....

Thanks

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2 3/4 with ???diagnosis and three other girls....mostly healthy.